Teen Years Pose New Risks For Kids Born With HIV

A boy waits to get his anti-AIDS drugs from pharmacist Rajesh Chandra at the Botswana-Baylor Children's Clinical Center of Excellence in Gaborone.

Jason Beaubien
/ NPR

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Originally published on July 9, 2012 11:33 pm

The southern African nation of Botswana is grappling with a relatively new problem in the evolving AIDS pandemic: It now has a large group of HIV-positive adolescents.

The teenagers were infected at birth before Botswana managed to almost wipe out mother-to-child transmission of the virus. These children have survived because of a public health system that provides nearly universal access to powerful anti-AIDS drugs.

The teens pose a new challenge for health care providers in Botswana. Most of the kids have been on drug treatment all their lives. Some are becoming resistant to the most common medications. Others are becoming sexually active. Some are becoming rebellious and no longer want to take their drugs.

"When you're a teen, your body tells you this and that," says Consulata, a single mother who's raising her 15-year-old HIV-positive nephew. "Things keep changing. All sort of things change because he's growing to a man."

There's still a strong stigma surrounding HIV in Botswana, and Consulata asks that only their first names be used.

Caring for HIV-positive teenagers, health officials say, is more difficult than caring for children or even adults. A doctor at the main public hospital in the Botswana capital of Gaborone lists teenagers, along with battered women and drug addicts, as some of the most difficult patients to treat.

One of the hardest things is making sure that teenagers take their medications regularly.

Consulata says with her nephew, Moemedi, they have a strict routine. He takes his pills every day at 6 in the morning and 6 at night. "We call it a 'thing,' " she says.

"I just remind him. Hey! Your thing. ... And he just remembers."

Moemedi goes each month to the Botswana-Baylor Children's Clinical Center of Excellence — also known locally as the Baylor pediatric AIDS clinic — to refill his prescriptions. Dr. Marape Marape, the associate director for research at the Baylor clinic, says in the past his facility mainly treated babies, toddlers, young kids. But because the drug treatment has been so successful, Botswana is now seeing a boom in teenagers with HIV.

"In the past, these children used to die at a younger age. Now they're surviving into adolescence," he says. "And you know, with adolescents there are a lot of problems that come." There are the usual problems of teenagers defying authority and struggling with self-identity — but these children also have medical issues. Most have been taking powerful anti-AIDS drugs all their lives.

"So you see a lot of resistance mutations," Marape says. "A lot of them don't take their meds well. They're starting to engage in sexual activity. You find that adherence levels are not as good as they used to be."

In addition, most of these teens have lost at least one parent. Some have only recently been informed that the medications they've been taking for so many years is because they're HIV-positive. Also, many have ended up living as orphans either in group homes or the homes of relatives. Botswana is a rich country by African standards, but many Batswana are desperately poor. One doctor in Gaborone, predicting how well a teen with HIV will progress on antiretroviral drugs, says that the disease and these kids' social situations are tightly intertwined. The more chaotic their lives, the worse their health.

Once a month, the Baylor pediatric AIDS clinic hosts Teen Club.

On a Saturday morning, about 120 teenagers gather in the parking lot in front of the clinic. All of the kids here are HIV-positive, and for many of them, this is the only place where they are open about their status.

Under a tall shade tree, the teenagers dance in a long line, each one holding on to the shoulders of the one in front of them.

Visually, the kids look like healthy teens. There's one boy who uses metal crutches, but he's thrown these aside for the Conga line procession. Another boy is extremely small. Dressed like a miniature office worker in a dress shirt and slacks, he appears to be only 6 or 7 years old. But he's actually 19 — and the oldest kid in the club.

Teen Club is essentially a support group for HIV-positive teens. They play games, go on field trips, discuss the difficulties of being on anti-AIDS medications.

In Botswana, there's still a lot of stigma around HIV. People whisper when they talk about it.

Consulata's nephew, Moemedi, says that except at home or at Teen Club, he doesn't talk about having HIV.

"It is very difficult for me to talk about it," he says.

Even for a boy who was infected with the virus at birth, HIV remains cloaked in shame.

Teen Club is an attempt to change that.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

MELISSA BLOCK, HOST:

This is ALL THINGS CONSIDERED from NPR News. I'm Melissa Block. In Africa, a success in the fight against AIDS has turned into a new challenge. The southern nation of Botswana has done well in treating babies with HIV, so well that a large number of HIV-positive children are now entering adolescence and they face unique medical and social problems.

Some are becoming sexually active. Some no longer want to take their medication and some have developed resistance to the drugs and must switch to more complicated treatments.

NPR's Jason Beaubien reports.

JASON BEAUBIEN, BYLINE: Being a teenager is hard enough without HIV. On a Saturday morning, about 120 teenagers are gathered in the parking lot in front of the Baylor Pediatric AIDS Clinic in the Botswana capital of Gaborone. This is Teen Club. All of the kids here are HIV-positive and for many of them, this is the only place where they're open about their status.

Under a tall shade tree, the teenagers are dancing in a long line, each one holding on to the shoulders of the one in front of them.

The kids, for the most part, look like healthy teens. There's one boy who uses metal crutches, but he's thrown these aside for the conga line procession. Another boy is extremely small. Dressed like a miniature office worker in a dress shirt and slacks, he appears to be only six or seven years old, but he's actually 19 and the oldest kid in the club.

Teen Club convenes here once a month. These teens are playing an impromptu game of keep-away with a soccer ball. On this Saturday, they'll also be voting for their leaders for the coming year and they'll debate at what age should teenagers be required to go to the adult HIV clinics in Botswana?

MOEMEDI: Sometimes, they teach us on how to be - live with HIV.

BEAUBIEN: Moemedi is a spindly 15-year-old. His shoulders, elbows and knees poke at the corners of his clothes. Despite 25 percent of all adults in the country being infected with HIV, there's still a strong stigma in Botswana around the virus. People here whisper when they talk about AIDS. Moemedi says that, except at home or here at Teen Club, he doesn't talk about having HIV.

MOEMEDI: It is very difficult for me to talk about it.

BEAUBIEN: Even for a boy who was infected with the virus at birth, HIV remains cloaked in shame. Moemedi's mother died 10 years ago. He's lived ever since with his aunt, Consulata.

CONSULATA: He is my son, but is from my deceased sister, so I am the auntie, really, to him.

BEAUBIEN: Underscoring the difficulty of talking openly about HIV, Consulata asks that we don't use their last name. Moemedi's mother was never diagnosed with AIDS. She just got sick and died. Consulata says Moemedi also was sick a lot when he first came to live with her. She remembers he had terrible ear infections.

CONSULATA: It was very bad. That's why those ears made me to say something is wrong because why is he always sick? You see, and he's coughing. That's why I finally see that something is wrong somewhere. I have to find out.

BEAUBIEN: After she learned Moemedi was HIV-positive and got him on medication, the ear infections went away and he's been healthy.

CONSULATA: And, even if he can be sick, he'll just be sick like everybody else. Just like everybody else, but really, he's strong now. I can see, he's very strong.

BEAUBIEN: He was five years old when he started on the drugs and he's been taking the pills every morning and every night ever since.

CONSULATA: He usually takes them at, like, six, so if I see the time is going on, I just remind him. Hey, your thing. We just call it a thing. And he just remembers what (unintelligible) his thing.

BEAUBIEN: Moemedi will turn 16 in September. Like so many African boys, he's obsessed with soccer. In the afternoons, he prefers kicking a ball in the yellow, powdery dirt behind his house than doing his homework. At night, he wants to watch Kaizer Chiefs on television, a popular team from neighboring South Africa.

Consulata says his grades are suffering and she has to remind him more often to take his medications.

CONSULATA: Remember, when you're 18 now, your body tells you this and that. You see? It aches there and there if we're so (unintelligible) want some kind of (unintelligible) respect, like the other things keep changing. You see, all sort of things change because he's growing to a man. Right?

BEAUBIEN: And this creates problems for the doctors, nurses, aunts who are trying to safely usher these HIV-positive children into adulthood.

UNIDENTIFIED GROUP: (Singing in foreign language)

BEAUBIEN: Every weekday morning at 7:00 a.m., the waiting area of the Baylor Pediatric AIDS Clinic is packed with women and children. The staff start their day with a prayer session in the lobby, then the daily rush begins. Many of the patients are infants and toddlers, but there are older children, too. Teenagers come before school to refill their prescriptions. Women at the front desk count each of the teens' remaining pills to make sure they're taking the correct number.

Marape Marape is one of the doctors at the clinic. He shows off one of the clean, modern HIV screening rooms.

DR. MARAPE MARAPE: Newborn kids who are born to HIV-positive mothers are sent to us from all over the country. They come here, they get tested. We check whether they have HIV. If they have HIV, then we start them on treatment.

BEAUBIEN: Dr. Marape says, in the past, they were mainly treating babies, toddlers, young kids, but because the drug treatment has been so successful, Botswana is now seeing a boom in teenagers with HIV.

MARAPE: But in the past, these children used to die at a younger age. They're not surviving into adolescence and you know, with adolescence, there are many problems that come.

BEAUBIEN: First, these children have been on drug treatment for many years.

MARAPE: So (unintelligible) so you see a lot of resistance mutations. A lot of them don't take their medications well. They are starting to engage in sexual activities and, you know, you find that the adherence levels are not as good as they used to be.

BEAUBIEN: Most of these teens have lost at least one parent. Some have only recently been told that all those pills they've been taking for all those years are because they're HIV-positive.

A doctor at the main AIDS clinic in the capital says HIV-positive kids tend to do better medically if they're in an orphanage than if they get shipped off to a distant relative. The more chaotic their lives, the worst their health.

That's why at the Baylor Clinic they're trying to expand Teen Clubs across Botswana. The monthly Teen Club is supposed to run from 9:00 a.m. until 1:00 in the afternoon, but on this Saturday the kids don't want to leave. After a lunch of cold cut sandwiches, dozens of kids are still lingering in the lobby of the clinic. They fiddle with cell phones that double as music players, they hold hands. They laugh and lean into each other.

One weekend a month, these kids don't have to hide their HIV status and they get to see that other teenagers are going through the same thing that they are.